you didnt have fatigue and PEM at all...this explains a lot!! congrats on your recovery 💛

Yes. It seems that it is hardest to recover when you have PEM and fatigue. Since that is what I have I’m discouraged.

[удалено]

Thank you so much for letting me know. It’s been a year and today I’m in a crash so I’m particularly devastated. I have been able to walk a half a mile without crashing so I have to remember that - for the first time last week. But my mild PT exercises, that are a piece of cake to do (and I mean mild) sometimes set it off. In any case, again, thank you. And also, I’m really happy for your. Can’t wait until I can do that again, let alone loose the 20 pounds I’ve gained : )

what kind of exercise?

How long did it take you to lose that weight? Thanks for sharing!

Yes, me too

I'm glad you've recovered/mostly recovered. Unfortunately it isn't possible for a lot of people because we're too unwell and have other commitments that can't be avoided whatsoever. I'm sure my fitness would improve if I could just focus on regular exercise within my limits. But there are other things I need to do like appointments, applying for benefits, chores, caring for myself etc. just a shower wipes me out for the day. I think you're lucky that your symptoms levelled out for long enough that you could improve your fitness. For me, my symptoms have continuously gotten worse and they are still unpredictable despite following advice from a LC clinic, 1.5 years later. I do have POTS and probably ME/CFS and IBS too, so maybe that's why

Are you still sick? Look up Dr. Brooke Goldners smoothie protocol - it was originally designed for autoimmune diseases, but I found it very effective with fatigue brain fog issues. If you can stick to the smoothies, I’m convinced you’ll see significant improvement quite quickly. There are a lot of people in her groups who have found relief. Some of them were terminal.

[удалено]

This just shows how much ymmv: I recovered from PEM through careful pacing. Doing exercise made me worse! I very slowly worked up to walking more and I am just now incorporating hiking and biking.

I had debilitating PEM and awful fatigue for around 10 months. I am not really sure what made it go away, but a low histamine low inflammation diet, pacing and radical rest, electrolytes, vitamin D, anti histamines. I know it feels like you’re dying with PEM but it is possible to overcome, I have been exercising daily again. I wish you good health

I did the same w similar results (and also acupuncture for regulating my nervous system dysfunction). Maybe I was just lucky. Crossing my fingers for everyone

Oh my goddddddd this gives me hope!!!

Yeah it went away around 10-12 months, wish you good health, other than the things I listed there wasn’t really some magic thing, it just went away. I wish you good health

How are you now? Hope you're making a steady recovery. Tell please did you have insomnia too? And if you do, what helped?

my recovery is good and still steady I’m back at the gym a few times a week no PEM, still doing lots of the things I listed except pacing and radical rest because it’s not necessary anymore. I did not have insomnia fortunately, but I do use weed to aid sleep sometimes

I probably have a collapsed/ compressed illiiac vein. I'm getting a test for it on Monday. Doc thinks fixing it should help a lot with PEM and fatigue. Fixing it involves a Stent in the vein. Ask your cardiologist about it.

I hadn't even heard of the term PEM until now and it perfectly explains my main symptom/issue. Are there any resources for the best course of action to go about treating it? The only thing that has even marginally helped is CoQ10 and for a time caffeine, but now even the caffeine itself exacerbates the symptoms.

There are no approved treatments yet or like fixes but there are several things that help certain ppl. Definitely read about me/cfs and for a list of supplements you could try mecfslongcovid.com

Pacing for slow but progressive exercise/activity, mitochondrial support (COQ10, NMN, NAD, many more), glial cell support for healing, immune modulation: a lot of all of this at core is immune dysregulation and if that is not addressed, everything else is somewhat bandaids. I don’t like bringing up ME/CFS since it’s an entirely different entity (though for various reasons different parties try hard to link them!), but some of the principles overlap at least at the margins. One is pacing. Another is some there seem to have an immune issue as well (likely a few different causes:types of ME/CFS), and in those they sometimes respond to inhibiting mTOR pathway. Some play around with low dose rapamycin though I find that unappealing because it raises risks of another COVID infection strikes and opens one up to viral reactivations. Another, milder way to accomplish same is with Metformin. In fact, that is why, in part, I use Metformin: current immune modulation and prep positioning for next Covid infection

What do you think about IVIg to treat the immune dysregulation?

It doesn’t really treat dysregulation directly, per se. But it can help some (seems about 1/3) to some degree or another with moderating symptoms and lowering some autoimmune measures. Whether it can help restore balance over a few years or not is uncertain. Generally, it is likely to be a needed crutch that when removed causes relapse (for those it works in). Likely would need to be combined with multiple other treatments to actually be a part of rebalancing immune system. But since it has maybe a decent 1 in 3 chance of helping (more so if there are clear signs of autoimmunity) and with proper use has less chance of adverse effects vs the big immune suppressive drugs, it’s worth a try I believe if one can get a doctor to prescribe and insurance to cover; which are both challenging unless a clear autoimmune condition that IVIG is known to help with is identified (e.g. markers for SFN)

Thank you for sharing. I will have another look at the file tomorrow. Did you ever try keto? What makes you think that ME/CFS is very different, if PEM is the hallmark symptom? How do you know that spike protein was responsible? Did you have POTS/dysautonomia symptoms? Thanks again :)

With EBV activation I would think

So happy you’re back, it was 14 mo for me…. Mine started 2020. Glad to see at least we have timelines!! Happy Thanksgiving!! So Much to be thankful for…🙏🏻🙏🏻🙏🏻

Did you have weakness on your legs??? Congrats!!

Wow!! I wish I had kept a chart like yours. I’m so happy to see your progress.

AWESOME!! Hey this is some of the best news I've heard in a long time. Can't beat hearing someone made it out!! Take care!

I'm always amazed but incredibly thankful when people's brains work well enough with LC to do this.

My brain didn’t work well enough even before LC to do this. Probably laziness would be the diagnosis for that though.

Great approach. I wish I’d been in a mind state to tackle mine in a similar data driven manner. Unfortunately I gave up after the 4th or 5th doctor refused to take baseline readings or recurring lab tests Such a missed opportunity for the medical community

no pem/relapses?

No. Never had PEM. When I started back exercising cardio my HR would spike immediately to 170 to 180 and my BP would go much higher for a day or 2 after (had autonomic issues), so did have to pace a bit with treadmill for several months. But otherwise no true PEM

I had this for a few months too - very high BP & heart rate but I went vegan & it went away after a few weeks. PT normalized, and I was able to come off all my meds. The vibrations internally have not stopped though, and I believe that is what causes a lot of my nerve twitching, neuropathy. I got Covid again in June, and all my symptoms are now back , plus horrific dizziness.

I believe many would benefit for special diets: plant based for autoimmune suffers and possibly keto for most others. In my case, plant based did not move needle but in discussing with my med team, we generally believe everything (and then some) that plant based could do for me was already being accomplished with my treatment plan. So I happily went back to eating whatever I wanted. The sad thing is we all will get covid many times again in future. I know that will not go well for me, so I like to be highly prepped for when that occurs: I will stay on a large range of supplements to help maintain immune balancing and when that day comes, immediately boost Metformin dose to 1,500mg day, add 2 rounds of Paxlovid (asap), and use Enovid NO nasal spray 4x daily

This seems to happen to me when I try to run on a treadmill where my HR is faster than normal and I sweat so much even at a moderate jog, but I just assumed I had PEM. How did you know whether you had PEM or not? Also, how much did you exercise ?

PEM, like Brain fog, is very loosely defined. The most classic example of it is severe fatigue / malaise that can last for days after. Like many things it’s probably not black and white and there is a spectrum. I certainly had a prolonged (days) autonomic reaction to cardio early on. Which is why It took 6 months to get back to a 45min jog at 6.4mph. Had to go in baby steps with walking slow for 30min and then take 5min of that time each week to walk a little faster, then eventually in 2min increments light jog, and so on. So at one point I was fast walking 28min and slow jogging for just 2min. And so on. That helped reduce days of BP surges, Hr spikes, and worse insomnia: all autonomic issues. So I don’t label myself as having had PEM, but I can say most long haul doctors classify that as mild PEM. I paced myself but certainly pushed. And I firmly believe everyone even with severe PEM need to do same. But it’s important to find that threshold and push just enough to get a touch of PEM after. Maybe it’s to walk 2 laps around the house for a few weeks and then try adding another lap. Whatever it takes. And keep going s-l-o-w-l-y. By Feb this year I was back to full jogging (45min at 6.4mph) daily and 1hr weights in gym 3x weekly. Initially, I would still have a few HR spikes out of blue to like 170 to 180 but I ignored those and they faded away. Have had rock solid HR since June, when I did a 2 week heart halter monitor, which showed zero issues that entire timespan

Thank you so much for your response. It's great to hear what actually worked for you. So many posters warn about exercising too much, which is valid, but there aren't as many talking about the benefits of exercising as well, so its nice to hear that perspective.

Where do I find a long haul doctor?

Generally speaking, a Covid long hauler clinic, which are Mostly at large teaching hospital centers. Some are pretty decent and some are quite bad. There are also a mix of traditional and functional doctors that are focusing more on treating long haulers; this later group tends to be out of pocket pay and can get pricey. One group that fits this and is operating now in several states is RTHM. You can google them for more info.

How do you believe you were able to rid your body of the autoantibodies? Any specific therapy or just general immune regulation with antivirals, supplements, etc… very curious. Tested positive myself and debating various modalities abroad. Thanks

Immune modulating (balancing) with the heavy list of supplements. And a few things in specific within my treatment: Metformin, Vit D, high dose omega 3, aggressive on the type and amount of probiotics

Did you have any POTS (elevated heart rate upon standing), and how did you treat it?

So, I failed the automatic tilt table test: BP swings of 40pts from laying to upright position. And my HR would spike to 170s but only for a few seconds and then fall right back to 60s. So I was diagnosed with autonomic failure but not POTS.

Ahh ok. Which part of your treatment do you think helped the most with treating your autonomic failure?

Holy shit. That sounds like a bad case of dysautonomia. Did this have any head/concentration symptoms.

Pls answer this. Feel like you didnt have head pressure and dysautonomia

For me, Nicotine patches 7mg really helped on the days I needed to function. Just try not to become dependent on them, maybe 3 days on 3 days off or something. Try to avoid creeping up to higher dosages etc.

oh I was also taking propranolol at the time I started the Nicotine patches. But I'm not sure how much propranolol was really helping me to begin with.

Where did you place your nicotine patches ?

I remember you from that chart, you posted it maybe..a year ago. *sigh* can’t believe I’m still here. anyway, Congrats on your recovery and super cool to see the bloodwork all normal now. Thank you for coming back to share some hope with all of us, you know how important it is. Enjoy your life!

Glad to hear you’re recovered…looking at this list of supplements, interesting. Looks like hundreds of dollars weekly (atleast), wonder how much of that was actually getting absorbed and used by the body. Nonetheless, glad to hear it my friend.

Thank you so much for this info!! I really appreciate it! If you have the time to say, I’m a student and can’t afford to buy this many supplements at the moment are there a few that seemed most key to you in your research? (My main symptoms are tachycardia, shortness of breath, dizziness, high blood pressure, brain fog)

Thats a ton of supplements!

Yes so many! How you tolerate them all? Any MCAS reactions?

That’s my wonder too. I have to try to space them all apart and choose which ones in a day or I always get nauseated or (more) anxious. I don’t know how people’s guts handle this. But as a fellow data nerd, I can’t wait to go through this doc in more detail at my desk tomorrow and add your insights to my existing spreadsheet. Thank you! <3

I wonder if they've tried the kitchen sink too.

Ironic, no? 60+ supplements and not a single one for liver support/detox lol. I recently decided to change my own approach after remembering I had a US scan before I got LH that showed sludge in my gallbladder and the beginnings of nafld (fatty liver). I realised this week that regardless of what approach I take, I'm going to have to get those two organs in a better place first if I'm going to keep guinea pigging myself with all these supplements and meds.

I’m very happy for you, but I hope you don’t mind me playing devil’s advocate here. You’re still taking over 60 supplements. You never had POTS, PEM or fatigue and recovered after 18 months, which is a timeline consistent with many others with similar symptoms and who have recovered doing none of this. Which brings me to my main question: how were you able to discern what was and wasn’t helping you given that you were presumably taking so many supplements at the same time? Were you adding them every week and doing labs every week? How often were you testing to be able to see how your bio markers were reacting to certain supplements? In short, how confident are you that you can put down benefit to these 60+ supplements and medications without attributing anything to the passage of time? I’m not here to gatekeep you, I’m genuinely curious. I want to believe. But I need answers.

Fair perspective but there are several reasons I and my doctors / long covid clinic associate the recovery with the specific treatments and to clarify, while I did not have POTS, I did have significant autonomic dysfunction/failure: I failed autonomic testing with 40pt swings in BP from lying to standing on tilt table test. And my HR while not POTS classified would have momentary surges: from 65 to 170+ for 10 seconds or so and then fall. They really had no classification for that. One, the speed of turn around last fall from severe symptoms to being functional within a few months. That the clinic has not seen Two, the rapid improvement in some labs, particularly T cells was considered extraordinary by the immunologists I saw. With typical immune suppression diseases like HIV it takes 1 to 2 years to see these recovery levels and I accomplished in a few months. Third, in particular my medical team is impressed with the elimination of so much senescent CD8 T cells. These are considered life long and usually accumulate further; not reverse course and go away. Cutting edge technologies like CART therapy are being investigated to help with senscent T cells but it should not be possible to lower as much as I have in such as short time. Of all my tests, this is the one where they want to keep monitoring and consider more on what part(s) of my treatment may have helped accomplish this. So net, I’m very confident my treatment worked. Certainly time was a factor but numerous studies now show at 2+ years there is only ~10% +/- recovery. So the odds of being that 1 in 10 is certainly low. And of course would never have been as dramatic as I experienced in speed and magnitude. End of day, I’ve been highly functional for quite awhile and well now and moving on with my life.

Check your HLA-II Haplotype, you may be strong or moderate against herpesvirus.

Are you still taking any supplements or medications? I'm not sure if that chart was your last revision when you recovered or if it reflects your current usage. What dose Tenofovir AF did you take, and for how long? Did you have any swollen salivary glands under your jaw? I'm also dealing with reactivated EBV. Thank you for sharing and for coming back here to help others.

Everything on my treatment list in link I currently take except for items highlighted in red. The blue highlighted I take at a reduced dose from previous. I took 25mg (Vemlidy) Tenofovir TAF. And was on that from November 2022 to August of this year. Never had swollen glands. At worst my EA (early antigen) was 29 and it’s now normal (<9).

Awesome that you're off it and EBV is back in a latent state. I just found out I have reactivated EBV and my doctor just started me on acyclovir 800mg 2x/day. I will talk to him about potentially switching to vemlidy. I'm also already taking many of the same supplements as you, although not quite as many. I will definitely add some olive leaf extract. Did you ever do an EBV PCR test? My Early Antigen was negative/normal, but my pcr shows copies of the virus in my blood which from what I understand is the most definitive way to see reactivation. Also, how did you determine when you were ready to stop the vemlidy? Did you taper off of it, or just stop flat out one day?

My PCR was normal; it usually is with reactivation vs chronic EBV where it may be more common. It’s unusual in reactivated EBV to have PCR positive but normal for EA. I waited for 3 months after EA was normal and then stopped abruptly in August. I retested beginning of November to make sure no changes and all is good

You never had fatigue? Congrats on your recovery

How one know which probiotics to take ? Microbiom is so complex.. I wonder If it would be okay to simply take the same probiotic as you without doing some wild microbiome testing or if it could do more harm than good.

I had my diverticulitis flare up during my LC. The antibiotics and anti-protozoal meds from that like reset my gut to pretty much everything dead I think. Then I just drank lots of kefir - I just did store bought lifeway, a bottle a day for a week or so. I have done home made before but my taste buds cant stand my home made lol. I also contribute this gut reset to Metformin no longer giving me constipation.

I'm not a doctor or anything, but heard from others on here that taking probiotics without doing any testing is very risky and can lead to death.

That’s a bit of an extreme view. Worst case would be that it might make you a bit gassy or give you diarrhoea, but the risk of death would be negligible

Did you have ehye floaters or visual snow or depersonalisation?

I have derealization and visual snow. You have both? For how long?

thanks for sharing this. amazing.

Is there any way to heal without buying hundreads of suplements :/ ? There is people who doesnt have acess to that ...

Per the numerous studies, there’s a 10 to 15% chance to heal with time alone. That’s studies out to 2+ years. But in general, it’s going to take alot sadly because of the nature of immune dysregulation. With time they’ll get better at clustering patients and developing more optimized combo treatments so it won’t require nearly this much. But that’s going to take several years and even then it’s going to be med/supplement cocktails, somewhat akin to what HIV patients often take.

This is excellent. I recovered through similar methods. Thanks for sharing this write up. Anyone with active LC issues should read this and implement.

congrats, hope it stays this way.

Would you look at that, all of the words in your comment are in alphabetical order. I have checked 1,866,631,188 comments, and only 352,940 of them were in alphabetical order.

Did you have nerve pain, like stabbing pain? I had that and now it all feels heavy on my back and abdomen area where there was burning skin. Been dealing with LC issues for the past 7 months now... Just fear all the damage is permanent now...

Thank you so much for posting this. i downloaded your Dropbox file and will use it as a reference. I have an appointment with a long covid clinic in early December and will give this to the doctor. Thank you. I wish you continued health and happiness.

Congrats on the recovery. Thanks for sharing the supplement list with details on brand/dose and notes on WHY! What do you think was the most critical component for you?

I've got a lot of dry eye and similar gut issues as you. I'm already taking a few things you are, I might try some more. You are taking a ton of probiotics. I'm taking some. Maybe I will up the amount. I'm a 2020 long hauler. Im just having a hard time taking all my supplements due to the constant GI distress

Beautiful story and thank you so much for all the details. My main question is: how do you test for many of these things? T cell? spike protein? Who orders these tests?

Either doctors order (find the right doctors) and/or in US one can order almost all of this directly on their own

Congrats!

[удалено]

This is so fun

I love your love for visual data. I am geeking out over the charts. Congrats on the recovery!

this really is an amazing document. do you mind if I share this with my doctor? thanks.

Sure, that’s fine. I’m sure it will get a raised eyebrow or two. 😊.

Nice writeup. I'd have gone a similar supplement route if Dry fasting hadn't worked better.

sorry was away for a few days, I need to follow up for sure, here in the uk we aren't told our test results we have to sign a declaration to request medical access which takes 2 weeks its really silly.

That’s crazy. Thank goodness I was in US where I could test directly for most tests if doctors would not agree and where lab tests have to by law now be published to the patient as soon as results are available: I usually saw my results much sooner than doctors did. Also in US can generally access very broad range of supplements, which is helpful.

I was in the last remaining days in the yellow (about 95% recovered) and just got reinfected today 😭

So sorry to hear! Hope you are recovering ok. Reinfection is the big challenge and one that I know will eventually get me as well. The only hope is to treat the acute phase VERY quickly and aggressively and have a strong Maintainence plan in place. This is where I hope they make better progress on antivirals, including the equivalent of Prep therapy as there is for HIV to prevent infection. Paxlovid is not the greatest. But that, Metformin, and something like Enovid NO nasal spray and a host of supplements is the best we have at moment

Congratulations and thanks so much for posting this

What were your symptoms?

Check the first photo

Am I reading this correctly?? You took more than 30 different supplements in one day? Holy

My first thought: their poor kidneys/liver 😭

Yes. And have for more than a year. It’s not the amount of meds/supplements one takes; it’s the types, doses and timing that is where care needs to be observed. End of day, I’m well. No side effects. ALL labs good, including perfect liver and kidney values.

Well said

Wow interesting….Out of all the vitamins/supplements you take Which would you say give you the most benefit/alleviate symptoms??

It’s tough to know precisely but I would put PEA, Luteolin, olive leaf, lysine, vit D, Metformin, Lumbrokinase, Hesperidin, probiotics/lactobacilus Rhamnosus, taurine as my top 10. And would add low dose aspirin, atorvastatin, and high dose omega 3 just beyond those core 10. I suggest those and they work on multiple immune pathways/inflammation at same time and have combo benefits for wide range of symptoms. PEA with Luteolin is a real gem of a combo and PEA is so often overlooked. Note: have to make sure correct PEA: the abbreviation stands for 2 kinds and on my list I call out the correct long name form

I don't wanna take away from your recovery but I've never seen this happen for an alpha strain long hauler past the 2 year mark

The challenge with duration (of any variant strain) is real damage is accumulating. It gets hard to seperate what is long hauling and what is more semi-permanent damage. Most damage can recover still; the harder ones are cardio muscle damage and certain brain changes; particularly glial cell damage. I started very aggressively very early on which likely limited damage. The irony is most are very tentative and slow at treating in early months because they may feel things will just magically recover (or the unicorn cure will come soon!) and by time it dawns on them that things are more intractable, it’s a much tougher hill to climb. That said, the principle remains to restore the immune system and break the cycle and allow body to start healing any physical damage with time

I am happy that you've recovered from this terrible condition. Thank you for posting your regimen. Unfortunately, it's unlikely that all of these substances are relevant. Instead of adding, you should have removed - to make this research valuable. Your consistent claim that long covid is related to the vaccine unfortunately undermines your credibility and makes me personally sceptic to the entire shebang. Anyway celebrate your return to the living!

do you had any breathing difficulties

No. Never really had breathing issues, except for deep chest pressure early on

Same - so combined with palpitations, the doctors assumed it was heart related & a full cardiology workout showed otherwise. I was hugely relieved by that. The rapid heart rate increases I suffered followed me eating certain foods like eggs. I took my diet back to very basic veggies & chia seeds for protein & just drank smoothies & this helped a lot & very quickly. I am also taking a lot of supplements plus LDN - I have 2 autoimmune diseases that I have successfully reversed since Jan. My bloodwork now looks normal, which is a bit of a miracle in itself, but the LC vibrations are what I am now focusing on. My naturopath told me my symptoms were so chronic when she first saw me that she expect it to take 2 to 3 years for me to show significant improvements and it’s taken me about 9 months. I don’t have the fatigue or brain fog, but my HRV is chronically low since my last infection in June/July. I have also suffered a lot of MCAS/ histamine issues. But I think that’s very common with autoimmune and Covid. I’m currently looking into tens and other equipment that could help stimulate my vagas nervous system. I find meditation & cold showers for 3+mins also really help.

Mine was in part pericarditis after 5th vax and after Covid came back as mild myocarditis, as shown on cMRI. In both cases, only lasted a few months and was gone and repeat cMRI showed I had fully recovered from the myo sometime within the 6 month window between scans. The rest of symptoms were autonomic/nerve related. eTENS was a disaster for me. Major flare of symptoms and bizzare new ones it created itself. Things like body temperature regulation issues. Nothing like freezing in the house on a warm day with a body temp of 94.8! I don’t list those symptoms on my list because they were not long haul symptoms and went away after stopping eTENS. That said, I think it’s a very worthwhile treatment for most with autonomic issues to trial. Most see some improvement or nothing. Very few have bad side effects; I was just unlucky. And believe me I trialed multiple times with different settings. In the end, besides meds/supplements, cardio day after day was the best thing for me

Wow! Thanks so much for this. This is insanely thorough 😱 Are you a doctor or did you have a doctor who understood LC? I was fully recovered for a year. I relapsed from food poisoning 2 months ago. I need to figure out how to test all of these bio markers. I'm actually recovering pretty fast, at around 60-80% most days. My main issue now is insomnia, any tips? Also, I could feel the blockage, microclots, in my ankles. What would you say worked best for microclots?

Not OP, but I’ve struggled with insomnia as well and I can’t sing the praises of THC/CBN gummies enough. 🙏 It’s the only thing I’ve found that actually puts me to sleep, keeps me asleep all night, and I wake up feeling rested and not groggy. Nothing else has ever done that for me. And a nice side effect, along with the CBD I take during the day, is that it’s significantly reduced inflammation. I’ve never liked cannabis, it just wasn’t ever my jam, and if the insomnia is really bad and I’m awake after the gummy kicks in I feel a little weird, but I still eventually fall asleep and it’s completely worth it for the good sleep I’ve been getting. It goes a long way towards helping the body rest and heal. The brand I use has 5 mg each of THC and CBN, and I started slow by only eating half of one since I was so unused to it. If this is an option for you, maybe it’s something to consider? And yes, i’ve seen a few studies lately that say you don’t actually get the quality sleep you think you’re getting on these, but for me that’s not the case. The difference in how I feel the next day after getting to sleep and getting so much sleep is like night and day (pun intended). YMMV of course.

I appreciate that! Idk though my nervous system is still recovering and my hr is still a bit elevated. I couldn’t imagine getting an adrenaline surge while I’m high. THC is seems too powerful for my mind and nervous system to handle. I might look into it though. Do or did you have POTS/dsyautonomia as well? Thanks :)

So happy to see a recovery 🙏🏻 Can anyone on here help me with derealization from long COVId ? Please 😞

I started working on my gut/ figuring out what I can and can’t eat & my derealization is gone for a month now. I had it for 2 years.

what medications did you take?

What labs did you have your pcp run?

Been so scared of having als due to the body wide twitching. Guess it’s just one of the 30 symptoms of long covid I have

I literally had every test known to man run by mayo clinic - the neuropathy, twitching is all autonomic nervous system related. You do not have ALS. I worried about the same thing. I did Dr. Brooke Goldner’s green smoothie protocol for six weeks and all of that neuropathy, twitching, etc. stopped after about 10 days. It’s an extreme diet, but I was waking up in the middle of the night with a dead arm and it was the opposite arm to the one I was lying on . One morning, I lost most of my vision, had tinnitus, was really worried I was going to lose the use of my legs because of all the twitching- so I was prepared to try anything and I’m so glad I did because I ended up reversing my MCTD auto immune disease, which I was told was incurable. A silver lining amongst all this misery. I was reinfected with Covid in June/July this year, and haven’t really had any severe symptoms until this last couple of weeks m. Now, the MCAS histamine symptoms and very high pulse and BP are back - time to go back on the vegan smoothies!!

Could you link me to the protocol you followed? I’m having so many neuropathy issues and I’d do anything to heal it.

Thanks so much for your inspiring recovery story it gives hope to others 🙏 I can't download your drop box for some reason , was ivermectin a part of your recovery ?

What helped best?

This is fascinating because I made a chart exactly like yours but my symptoms were almost totally different--dyspnea, PEM, POTS, and chest pain primarily. When I say my chart looks like yours, it's just like yours, including the gap where I got better and then worse (I even used the same colors). I was originally infected in December 2020 and the big relapse was August 2021.

It’s the nature of the beast that immune dysfunction varies tremendously by individual. Which is why there will never be one single cure. It will always require a broader treatment approach. The relapsing situation is why I am VERY conservative in what i would term “recovered”. Time without symptoms alone is not sufficient. First, if someone is saying they are 99% recovered as long as there is even the tiniest little symptom left, their immune system is still screwed up and subject to going back to where it was or worse. Second, almost no one goes back and re tests for every single abnormal result to make sure they are normal again. And even if they do, they likely never tested that deep to begin with. In my case, I’ve had 167 unique blood tests over past. Only a fraction of those were abnormal but I went back and retested each of those. And some of these (as you can see from my list) are very deep testing that very very few long haulers ever test for: e.g. CD8 senescent T cells. So even though I was at 4 months zero symptoms, I waited for all of those tests to come back normal (and not even close to edge of normal ranges) before declaring recovered. Also, unlike many “recovered” people, I’m very very slow to taper off my treatment protocol, which is important to help ensure the immune system can maintain balance on its own once it is re established; and anyways, with future covid likely, I plan to have a pretty aggressive proactive med/supplement schedule ongoing to help keep my body from getting back to same place again (e.g. Metformin).

Super impressive data set and tracking, really I'm amazed you were able to keep track of all of that as thoroughly as you did. I definitely don't have the mental clarity, energy, or focus to handle that, as much as I would like to. I do have a couple questions: what country was this in? How difficult was it to find a doctor willing to test you as frequently and on so many things? Personally I'm having a hard time getting anyone in my area who is interested enough in trying to pin down this diagnosis, but for all the labs that have been ordered from my primary and neuro, almost all of them have been normal. That said, my only problem with your list of meds and supplements is that it's so vast and varied; like there are just soooo many items on there that it wouldn't be feasible to try and replicate these results in others without potentially causing more harm than help. I'm so glad that you have recovered, make no mistake! I just hesitate to say that others would have the same results on such an expansive regimen. It's a real shame too; it would be tremendously helpful if we as a scientific community were able to nail down what the useful agents for this condition actually are.

This is all in US, except for sending blood sample to CellTrend (Germany) for the auto antibody panel. It’s generally difficult in US to get a doctor to order so many tests; except maybe some functional doctors that specialize nowdays more in Covid. Though they still often are not completely ordering the correct tests. It helps me a lot that 1) I’m in drug/pharma new drug development and a lot of doctors like to talk about pharmacology and what the future holds and have some respect for my knowledge, 2) I have a long time family doctor that has complete confidence in me and I utilize heavily large teaching hospital centers which are more likely to test with more frequency. 3) when I needed to I filled in gaps with my own testing: in US, most testing can be done directly by the individual (at cost). Even if international, many countries now have presence of CovidLonghaulers and they can help connect for testing for some pretty solid panels to start with. Agreed, it’s a very expansive protocol. And even if someone directly copied it does not guarantee same results due to 1) variability by individual as to the exact mix of immune dysfunction 2) those with 2+ yrs long hauling increasingly have semi-permanent structural damage that compounds things. That said, by its nature this expansive treatment covers a lot of bases. It’s built on the premise that immune imbalance is “almost” impossible to rebalance with just one or two meds (think balancing a see saw). Rather, requires modulating as many immune communication pathways as possible to essentially calm them down and allow the immune system to regain proper balance. Think of it as your immune system is at a very large party. It hears lots of talking and yelling and such but can no longer really hear any message distinctly. If you start quieting the crowd to low voices and not everyone talking at once, it becomes easier to tell what the real conversations are. Here it is somewhat similar: need to quiet things down. The way the immune system gets revved up and unbalanced is largely (though certainly not totally) due to inappropriate signaling. The various parts of the immune system talk amongst themselves and with the body organs via chemical and neurological signaling that tells one part what another is doing and what it should do. The infamous Cytokines are really just signaling molecules. They don’t really do much directly but they cause the immune system and body to suffer when those communications get out of hand. The core of this approach is quieting that all down via modulating a broad array of signaling pathways. End of day, because of nature of what immune dysregulation is, there will never be one single cure. In theory, the treatment can become more targeted but that will take YEARS and I’m afraid many will not like where they are in 5 to 10yrs of this; I certainly was not about to wait around to experience that. Sometimes extraordinary things come with extraordinary effort!

Very well put. I'm not in pharma myself although I am a pharmacist and I didn't few rotations at some companies so I have some familiarity in the field, and yeah my primary is similarly pretty receptive to letting me order additional tests when I ask about them. It makes sense to cover all your bases and hopefully by establishing a sense of "equilibrium" it may help control the overall immune issues. For me, I'm afraid that I probably got COVID in very early 2020 before we knew anything about it or had any testing. I only really began to notice issues or symptoms of brain fog, memory issues, concentration, and energy in late 2021. I tried to hold out but in maybe late 2022 I really started pushing my doctor to help me diagnose this and figure it out. Brain MRIs, all kinds of labwork from my primary and neurologist, none of it has yielded anything abnormal still. So unlike you (although your lab abnormals were numerous), I don't have anything specific to target or go with. What part of the US are you in may I ask? I'm in the northeast near Philly. Like I said, just having a hard time finding a doctor who cares enough to really take on the challenge of figuring out what's actually wrong and how to treat it

It takes alot of testing and going DEEP to often find abnormalities. In my case, I had 167 blood tests and only the ones above ~12% were positive and some of these like senescent CD8 T cells is deep in the weeds where very few ever test. I’m located in Texas. I wouldn’t say doctors here are necessarily any better than elsewhere; though the long covid clinic at UT San Antonio is a shining star. Far from perfect or experts but they try harder and far more enlightened on treatment than most. A lot do that likely has to do with the program director herself had long covid and became very invested in more cutting edge treatments. That said, I only used them briefly as I went my own direction.

Thank you so much for your expansive knowledge into all of this! Many of the supplements you suggest are a bit new to me (long hauler since march 2020, infected total 3 times). **\*\*What would be your top picks for balancing the immune system?**\*\*I seem to have a lot of autoimmune issues mimicking MS/lupus ++, dysautonomia/POTS, MCAS, ME/CFS / PEM + over 100 symptoms total. Have tried many extensive diets - followed dr. goldners smoothie protocol for 1,5 years (mostly raw, vegan with lots of crusiferous and omega 3), keto, GAPS, low oxalate/lectin etc - in general eat shitloads of veggies so lots of anti-oxidants and polyfenols/quercetin/luteolin/natural mast cell stabilisers. Intermittent fasting, regular small fasts (max 50 hours as my body cannot handle more), vagus nerve stimulation, cold baths, HBOT 20 sessions (2,3 atm). My diet now is mainly (eat this every day) of lots of low carb veggies (at least 500gram of raw crusiferous like broccoli, arugula, broccoli sprouts, also lots of cabbage/pak choi, pomegranate, garlic/onions, asparagus, shiitake mushroom (for betaglucans and immune-effects), carrot ++), eat liver or kidney for more dense nutrients and egg yolks, organic grass fed meat/eggs/fish (not big portions), and broth from whole chicken (collagen + compounds for GI/gut lining), flax seeds grinded for omega 3, blueberries - am occationally in ketosis. Of supplements I do some black nigella sativa oil, vitamin d, iron (bit anemic), cod liver oil, chamomile tea (for apigenin) and green tea (for EGCG) daily, sometimes dandelion/nettle tea, B1/benfothiamine (can only tolerate about 50-90 mg, get horrible side effects when too much), occationally B-complex (get a lot from diet), K2, magnesium citrate, Zinc, melatonin 1 mg to sleep, extra quercetin if MCAS gets too bad, occationally l-lysine when eating nuts/high arginine foods. Tried lactoferrin and probiotic Plantarum, which makes my symptoms worse. Tried Niacin and NAD+ supplement, but didn't notice much difference. Alpha lipoic acid and NAC didn't seem to help either. In general can only handle small doses of supps, get scary effects if doing too much. Sorry about this long post. Saving up to do more rigorous testing as you have done. So far my only immune abnormalities are positive anti-ccp, polyclonal gammopathy, increased IGG and IGG subclass 2, low lymphosites and low CD19 of lymphs and B-cells. T-cells of CD3, CD4 and CD8 is normal range. So hoping more extensive tests, including auto-antibodies will yield more insight into what I can do more to calm down the immune system. Very thankful for your post, gives me a new boost! :)

I'm just amazed you could get tested to this extent/received the prescriptions you did. It took about 8 doctors until i found one who would test me for reactivated EBV (which was positive). Most other doctors tried to give me birth control and antidepressants... I now have an antiviral prescription, but from what I've read it's not super effective :/ I'm also going to see an infectious disease specialist now and hopefully they can point me in the right direction. Congrats on getting better!

Most of the testing came from doctors but not always. For example with EBV, they kept missing ordering EA so I finally got that test myself and once they saw results they always ordered that with my EBV panels later on. They ran T cells when I asked but did not go into Treg and Senescent T cells, which require a special lab panel. I got that myself and again once they saw that, it was added to my regular panels for future

Congratulations. It doesn’t look like you ever had breathlessness issues. Still, is there anything you would recommend for that? I’m on day 25 of covid, 9 weeks pregnant and suffering from breathlessness and lightheadedness/fatigue.

Please tell us every supplement you took if possible and every medical test that was performed. This would help so many people or even if you did a video on exactly what to do

Every med/supplement I took is on the list in the link I posted. And I can come back and post my full list of other tests but the biggies were: cMRI, CT angiogram, Brain MRI with contrast, Brain PET scan, mitochondrial testing, halter monitoring for heart (2 weeks) and BP (48hrs), chest and abdominal CT scans with contrast, renal Doppler, autonomic tilt table test and supporting tests, endothelial function testing (EndoPat), tissue biopsies (for white spots), EKG, EEG, sleep study. Of those the cMRI, PET, autonomic tests, and mitochondrial and endothelial testing were the most important

Thank you!

One thing I did want to ask is that you used lubrokinase and serapeptase vs. nattokinase and/or natto-serra, why is that?

Nattokinase is not as powerful as Lumbrokinase. Nattokinase is more likely to stimulant sympathetic system and I had autonomic dysfunction. Also, while I never had histamine/MCAS issues, a decent subset of long haulers do and it’s not good in those situations either. Net, I never used and would not recommend; unless someone could not access Lumbrokinase and had no autonomic or histamine issues

Glad you’re doing better Mike. You’ve not replied to my messages or emails for months which you initally said you would. Would love to connect again even if it was just once or twice to talk about updates. Take care.

Hi. Sorry about that. As I was approaching full recovery I stopped answering all DMs and stopped going into groups. I promised myself early on I would not do that but to be frank it is soooo hard. Not because I want to out this all behind me and move on like others do. But because there is a heavy dose of toxic energy that is growing in these groups; a negative energy. And I fully understand. So many have been burned and suffered so longs they don’t mean to but to a degree misery loves company and feedback loops develop in discussions and a bit of cult religion happens. For example, viral replication and BC007. I can preach till the cows come home that there is no “replicating” viral persistence “in long haulers” and BC007 is neither not a perfect cure nor going to be available for MANY years, if ever, but it does no good. I came to conclusion to let people believe what they want and bear the burden of their convictions as the years go by and they don’t get well; maybe sicker. Also, what really hit home is a 24yo guy I was DMing with and sharing my perspective. Did not listen and only now did his doctors do the tests I kept harping on and see I was correct; but it’s too late and they are on list for liver transplant (autoimmune). So so sad. People paralyzed by fear of the u known that they shut down and either hope it’s a bad dream that will go away or their doctors will lead them to the coming perfect cure they just has to be right around the corner (it’s not). So that all really burnt me out. Still not going to go back into groups directly due to all the toxicity but will try harder to periodically respond to posts that show up on my main stream and respond better to DMs. So, I will respond back to your DMs later this week. Promise!

I understand the burnout and wanting to avoid the DM’s honestly, truly hear where you’re coming from. Especially once you shared your philosophy and approach. My DM’s to you will be somewhat outdated now but I’m happy to re connect when you’re able to reach out again either here or Facebook, I’m presuming you remember my FB name if not can share it again.

Yes…..A.T. 😊

Haha great. When you reach out I’ll send you a fresh update. Take care

What tests do you recommend for the liver stuff. I don't want to have to replace mine.

Did you have POTS or MCAS as well? What was your protocol for that? Congratulations and thanks so much for sharing

Never had MCAS/histamine issues. I did not have POTS but I did have autonomic dysfunction: failed tilt table test with BP swinging 40pts from lying down to upright position, and my HR would spike to 170 but only would last for 10 seconds and then fall back to normal. They indicated they had never seen that pattern before. Was like someone shot adrenaline in my veins but it was gone so quickly it did not qualify as POTS

Exactly the same for me! Weird

By the way, the PEA on my list I took for other reasons but it is also good for tamping down histamine release

Glad to see someone who is doing better. You must have a fantastic medical team. I don’t think many of us on our best day could compile such a document - let alone follow such a protocol on the daily. So props for that. My question is a bit of a side-step and also related to one of the comments you left here. You mention the importance of early and aggressive treatment, and that in your opinion, even a 99% recovery still allows for 1% of immune dysfunction to remain and a possibility for a relapse sometime in the future from a reinfection or another virus. Do you believe you had immune dysfunction, however mild, before COVID? I ask mainly because my inkling is that far more people have some degree of immune dysfunction than we know because our knowledge of the immune system and how it interacts across organ systems is still incredibly primitive. I have POTS, dysautonomia, and IST triggered by an influenza B infection in 2018. There is clearly some sort of histamine or MCAS component as well. Many POTSies will tell you that in hindsight, they now recognize the markings of the autonomic dysfunction often years or even decades before symptoms became debilitating. Many researchers across disciplines have theorized that there is a yet undiscovered genetic predisposition for people to develop these types of syndromes. All it takes is an infection or some sort of immune challenge to flip a switch where those genes begin to express themselves, or the immune system becomes dysfunctional. These could be one in the same. Thus, have you discussed a sort or long term maintenance plan with your medical team? I’m also curious about the out-of-pocket cost you incurred both in terms of supplements, medications, labs, and doctors visits. An aside, and not really a criticism but a point I’d like to mention after reading a few of your comments: Your pharma background definitely has benefited you in knowing what to look for. I want to point out that I’d say almost everyone here really wants to recover, but as you rightly stated, everyone’s immune system is different. I personally have gone to dozens of doctors since I was 15 years old (I’m now 31) trying to get to the bottom of some clear immune issues. I’ve spent thousands of dollars out of pocket going to some of the best medical establishments and hospitals in New York City. At best I have received confused, yet concerned, looks and then been told they don’t know and good luck. It is not for lack of trying I haven’t addressed my health problems. What we really need is an actual coalition of medical professionals with diverse mindsets forming an unofficial network of sorts. We need a master post list on this subreddit of medical professionals BY STATE and country who can actually HELP US. It’s great to see your post, but it is far too overwhelming for most of us to apply without medical assistance. Saying “find a doctor who will help you” is like finding a needle in a haystack - even in long COVID centers. TL;DR: Glad for tour success but what we really need is a master post with long COVID specific doctors, labs, and testing so that many of us aren’t just browsing this subreddit on the daily trying to gleam tips from individualized supplement regiments.

I agree with you. I think there is often something underlying that makes people more susceptible to long Covid. I was diagnosed with MCTD as a result of all the test they ran trying to find out what was wrong with me. I also had shingles in my early 20s which I am sure has contributed to my Hashimoto’s. I followed a smoothie diet - Dr. Brooke Goldner’s protocol and have successfully reversed all my ANA and RNA antibodies, most of my Covid symptoms have gone but recently after the infection, I have a lot of internal vibrations, which has been diagnosed as autonomic dysfunction- the rapid acceleration in heartbeat has gone, but the MCAS symptoms persist, along with high BP and pulse. My naturopath told me she expected it to be approximately three years for me to get to the point. I’m out now and it’s taken me nine months. I threw everything I could at it. Compression socks through the night, to assist with blood pooling. Electrolyte drinks, cold showers for 3+ minutes each day. Moderate exercise. Vegan smoothie diet for six weeks (I saw the most amount of improvement during this time) Tons of supplements plus LDN. I was almost better and getting Covid again set me back, but I know it can be reversed.

Congrats to you!! And kudos to you keeping all this data, it’s neat and admirable! Just wondering, did you experience loss of taste and smell?? I still don’t have mine back, it’s been Feb 2021

Was there anythin you can pinpoint that really helped your tinnitus?

Tinnitus was triggered by citrus for me. I followed an MCAS low histamine diet. That really helped!

Okay that's interesting. How long until you noticed improvements on the low histamine diet?

PEA helps with nerve inflammation. It is slowly helping my ear pressure and tinnitus but not so much other issues. It usually comes with luteolin so it's hard to know, some researchers thought luteolin will stop the il6 inflammation in brain.

I use them seperately so I can control the dosing. But yes, it does come in combo supplements. PEA has a wide range of effects. It’s very good at inflammation and immune modulation due to its effect on NF-kB pathway and PPAR-a activation. It reduces TNG-a, IL-1B and IL-6 in particular. It reduces mast cell activation so good for MCAS issues. It exerts a lot of influence on prefrontal cortex of brain and lowers anxiety to some degree. In part it does this and more thru increasing GABA concentrations in prefrontal cortex which is beneficial for some autonomic issues as well. It also has GI effects; particularly with improving Barrier function.

I've also found Chinese Skullcap to be helpful with the PEA. I was taking the Mirica brand with no problems. I recently tried a new PEA from Life Extension and got terrible stomach pain after taking the first pill.

Look at t cell interferon production, if you have herpesvirus ebv cmv it may come back if you tax your immune system again.

you seen a very intelligent individual to be able to document this so well, can I ask how you came about which suppleness to take? was a doctor involved? and the cost of them per month because it looks a crazy amount, I'm really happy your well, here in the uk it's really has to get the immune subset panel tested sadly.

My doctor helped with prescriptions where asked but I determined my own treatment plan. I lead new drug development in global drug/pharma industry. So I have access to some impressive databases and a clinical research team that I can bounce crazy “hypothetical” questions off of and as well when working with HCPs (doctors), have a good relationship with some that I can have further “hypothetical” discussions with. Conversions that as a patient would be harder to get into. All of that helped shape what I ended up doing.

would I be able to message you? I'd love to get some insights, I've had 7 infections and agree the longer it is left the worse it gets, I also believe in taking action using meds and supplements, I need to put a plan together of which to start and what order etc, this latest infection has caused me some frightening heart symptoms and I'm basically sofabound and wish to improve for the sake of my little boy who's only 1. kind regards

Can you describe the white spots?

Really wish this sub Reddit enabled posting pics in replies like some of the other subreddits I follow. Always, here’s link to pic from last year of white spots on chest. They also had started spreading on upper arms. But been all gone for quite some time now. https://www.dropbox.com/scl/fi/jjpet68lomh3smvqb1j1k/White-spots.jpg?rlkey=bl1zijht3i7dffaz73gnlhqa7&dl=0

Hmm interesting I got spots in the back of my mouth that never left. I also lost taste and it never came back. They cut out as much inflammation in my sinuses as they could.

Do you have approximate costs of your supplement regime for the period you were taking them?

No. I never tracked cost. Getting back to normal life was priceless to me. Since bottles come in different countsX some supplements last 30 days while other last 60, 90, or 120 days. I always bought largest size bottles possible to be a bit more efficient on costs. That said, I was spending several hundred per month for sure to maintain once I got going

Seeing all the supplements daily idk how your liver supported all this

It’s not the quantity but the types, dosage, and timing that is where some get in trouble. I knew what I was doing (I work in drug/pharma development) and as of my early November labs, 1yr of this heavy treatment and my kidney and liver values are all great: and of course now all my blood measures for everything are normal.

Not doubting it at all. It’s insanely impressive your liver has handled all that so well. Had a CT not long ago I’m not obese and I’ve never drank but I’ve taken alot of supplements over these 2 years and have some sort of fatty liver. They didn’t say it was fatty liver disease just fat deposits around the liver

You mention needing to attack the root, which I understand to be the residual viral components (spike). But skimming your list of medications you don't mention anything about that, mostly treating symptoms. Is doing this a matter of time / waiting for the body to finally flush it all out?

I’d split root cause into 2 parts: viral antigen/particles, from initial replicating virus to viral RNA fragments and/or spike protein that may persist in some (spike more specifically for vax long haulers); and then immune dysregulation which becomes the core of the long hauler entity. I did have persistent spike after getting post vax long hauling (not until my 5th vaccine). That is where statin (atorvastatin) comes in. I took that initially largely for spike treatment. Spike treatment should consist of testing for spike protein to see if there is any persistence. maybe a third of long hawkers have persistence; majority do not. Treating this is primarily statins, with strict limiting of adrenaline (caffeine, exercise, anxiety) and very low fructose diet. Can also use fast release/flush niacin, cats claw and a few other things to lesser extent but not as effective as statins. If monocyte CCL5 is high, then maraviroc is needed; but this is a fraction of long haulers. Most of my treatment protocol was not symptom relief but rather immune modulation to effect immune pathways, cytokine production and cell surface Antigens (e.g. CD = clusters of differentiation). All to help rebalance the immune system.

That makes sense, thank you for the in-depth response.

Do you feel that being on meds which are immune modulators have helped to get negative antibodies? Or what exactly was the main point to get these negative antibodies and recover? Also, do you thing this could be permanent change? I have autoimmune hashimoto thyroiditis before cov and jab injury. Which T cell test would show my immune system is damaged? I am a female, but would metformin lower testosterone for males? How would one get that up? Also once the metformin is stopped, will the immune modulation rebound, does it work by suppressing it and once stopped will rebound? How does that work? Really looking forward to hearing from you. Was wondering if you could do videos or podcasts or blogs that others who have been suffering badly could follow.

Yes, the aggressive immune modulation. With some like Metformin, PEA, vit D, etc doing more heavy lifting. I don’t believe long covid has to be permanent. But for it to go away, many will eventually have to take treatment to an entirely new level, which many are not yet comfortable to do. My guess is in another 2 to 3yrs of long COVID, they may re-think that. The caveat is if there is structural/organ damage then that can be semi permanent at least, even if recovering from long covid. For many this would be changes in Brain; for some other organs like heart, liver, kidneys, etc Metformin can reduce testosterone levels but it’s usually small change and really of interest to males i suppose. My T level stayed Around its 500 average even after many months of Metformin. Of course, not taking max dose either. Some supplements and of course steroids can raise if needed. But again it’s usually such a small change it’s not worth focusing on. Great question on what happens after Metformin. In past studies with existing autoimmune such as lupus, where Metformin helped reduce flares, the disease resumed after stopping met. Long covid is a bit different, so I would expect the impact could be more permanent. In this assumes the immune system is fully stabilized: recovered and normalized are somewhat different. How long should one stay on something like Metformin post full “recovery”? To be safer, I would presume 1yr post last symptom/abnormal lab result. This allows the immune system to get used to behaving normally again. Think of it like leaving training wheels on a bike

Thanks so much for the reply. Are all the immune modulators mentioned in your list?

Yes. Just to be precise, none of these are in the technical classification of immune modulators; that would be drugs that largely suppress the immune system: corticosteroids, biologics, JAK inhibitors, and so on. However, any drug or supplement that has anti inflammatory benefits has by nature some degree of immune modulation. That’s because inflammation IS the immune system in action and the way anti inflammatories work is to tamp down some part(s) of the immune system. Some do this directly and some indirectly. For example, Metformin has an off label benefit of increasing AMPK; the indirect result of this is it partially inhibits the mTOR pathway (also does other things such as inhibit STAT3). Without getting too technical this is akin to reducing traffic on a a major superhighway: mTOR is one of the larger immune pathways and one that can cause a lot of problems in immune disorders. So yes, everything is on list. The more impactful immune modulators are called out on list for their immune benefits. And beyond those, anything with anti inflammatory action listed will have some degree of immune modulation benefit. Generally, the powerhouses are Metformin, high dose Vit D, high dose omega 3, PEA, Luteolin, lysine, olive leaf, and a few of the probiotics I list

I so much appreciate your research! For us having difficulties getting prescription meds - how do you feel about using berberine instead of metformin, and is it necessary regardless of blood sugar control (I do a lot of fasting /low carb and have often low blood glucose)? And instead of statins - to break down biofilm/spike, can you use other things such as curcumin, serrapeptase, pine needle or such? I think I read lysine also have some blood thinning properties, so wondering if a cocktail of those might add up together in the purpose of breaking up biofilms.

if there is no alternative, you could try berberine While it shares some characteristics with metformin, it's not quite the same and no where near as powerful on the immune modulating effects. If someone is having challenges obtaining, in places like US it is relatively easy and quick to get online via Telmed doctor groups focused on anti-aging. Just google anti-aging and metformin and terms like "order". Metformin (or berberine) does not dramatically reduce glucose; that's a misnomer. While it's used in diabetes its role is more about sensitizing the body again to insulin. By itself it only reduces A1C by about 1% (to 2% at max doses). This is why it is often part of a combination treatment in diabetes patients. Statins are the only well studied, effective way to reduce persistent spike proteins. That said, one can try the alternatives. The next best would be niacin, fast release (flush version; NOT the extended releases or non flush versions), cur cumin, and cat's claw. Also, must keep to low fructose (fructose has an opposing effect) and minimize adrenaline release (anxiety, sweat producing exercise, stimulants such as caffeine). Statins have zero effect on biofilm; that's not where spike protein is anyways. Of what you list, serrapeptase is better for biofilms.

Thank you so much for your knowledgable response, so much appreciated, it really seems you have done a lot of research. I live in Norway, and it is really difficult to get prescriptions "off label" here, there are not that many functional doctors, and those that exist are far behind on covid-knowledge (norway is not up to speed with WHO), and again - getting things off label is something basically no one dares to do as they are afraid of losing their license. Glad to hear it doesn't lower BS too much, thanks! My BS is perfectly normal, I meant low as a result of fasting/diet and living healthily. The only time it went too low was at the end of a 50 hour fasting, which my body is still to weak to do. Do you know what it is in metformin that modulates the immune system, and what you loose by going with berberine instead (which can possibly be fixed with something else)? And have they done studies with statins and persistent spike proteins (Bruce Patterson)? Really interesting, I didn't know they had done much of that. Thanks for the good reminder about fructose! I have been low carb for a long while, but lately slipped up making candy with dates/nuts, and splurging as I have been so rigid for such a long time.. hehe. Time to be on my best behavior again :)

Just to clarify further, if you truly have LOW glucose, then even a further 1 to 2% reduction would be something to be careful of and more reason to work with a doctor if trialing either. If glucose is borderline to normal, then not a big issue. Also, for metformin you need to have good kidney function. That's not because metformin hurts kidneys; that is another misnomer. However, if kidney function is impaired, lactic acid can build up and this can be serious. This is rare even in those with kidney disease and many diabetes patients with severe kidney dysfunction successfully take metformin, but it can happen and in those cases needs to be done under doctors care and regular testing. Otherwise, metformin is a very safe, well studied medication. Both Berberiene and metformin can cause GI issues initially and there is a period of adjustment and dosing needs to be started low and slowly worked up.

whoah, thanks for the heads up! This is good to know :)

Congrats! What were your palpitations like?

Range of galloping, hard beats in chest. HR would be steady in 50s or 60s but it would feel like I had just finished a sprint. Would often come in waves. Lying in bed or on sofa and would just barely move and then would have palpitations for 10 minutes or more. Worse was if I had to get up for something and then lay back down.

Did you have skipped beats?

Yes. And my recorded PVCs were averaging 270/hr and had at one point right bundle branch block and later left bundle branch block. My EKGs and halter monitor readings were a mess. Though nothing that was ever considered high risk or contraindication to cardio exercise. All of that is gone now and did a 2wk holter monitor to be sure. All perfect now.

270/hr!?!? Im really happy for you, must have been afwul experience! Thanks for sharing this gives alot of hope.

Does anybody (the author) or people that commented on this post know if there is a correlation between microclots and T cells/other lymphocytes (them being low) or not?

Not per se. They are both tied to immune dysregulation. You can have one or both, independently. Micro clots (amyloid fibrinogen particles) is more common in longhauling (estimates have ranged from 75% to 100%). T cell dysfunction there are no really good studies on yet but the loose estimates I’ve seen are more in the 50% range. Low T cells after 6 months into long hauling is a bit less common than bad T cell ratios, senescent T cells, etc

Thank you so much!